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-   -   STICKY - The Vitamin B12 Thread: (https://www.neurotalk.org/peripheral-neuropathy/85103-sticky-vitamin-b12-thread.html)

mrsD 02-26-2010 04:00 PM

There is a condition, which BTW is not rare, called Pyroluria.

It can be misdiagnosed as mental illness. Estimates are that 10% of people can have it...and it can cause severe anxiety and mood swings.

Please read this:
http://www.drkaslow.com/html/pyroluria.html

b onna 02-28-2010 12:46 PM

Thanks for ALL your help this morning, MrsD.

I'm waiting for my vitamin order to come in and will make sure I ask my neuro what my B12 number is when I see her in two weeks, if not sooner. I hope the tests come in quickly so I can get in there quickly and start being proactive to get this under control.

Martin_12 02-28-2010 10:47 PM

Units of measurement used in B12 blood tests
 
In the USA B12 is measured in picograms/mL (pg/mL) while in Australia and other countries that use the SI system the units are picomoles/L (pmol/L).

According to the American Family Physician paper by Oh and Brown (2003)
http://www.aafp.org/afp/2003/0301/p979.html
the conversion factor is approximately 4/3.

To convert from pmol/L to pg/mL multiply by 4/3 or 1.355

To convert from pg/mL to pmol/L multiply by 3/4 or 0.738

Martin

simsons 03-29-2010 01:03 PM

How low is low B12 level
 
My B12 is 206. Neuro says normal is from 180 - 800 so mine is normal low. Cal you have symptoms at this level. I have weird vibrations/shaky feeling most of time. Specailly when I am standing or sitting too long. ANA was positive at 1:160 but eveyhting else was negative. EMG negative for left side. All tests so far are negative. I have pain where I have vibrations. In leg calf muscle and behind neck. Am curious. Have thryoid but controlled with meds.

MelodyL 03-29-2010 01:19 PM

Quote:

Originally Posted by simsons (Post 638058)
My B12 is 206. Neuro says normal is from 180 - 800 so mine is normal low. Cal you have symptoms at this level. I have weird vibrations/shaky feeling most of time. Specailly when I am standing or sitting too long. ANA was positive at 1:160 but eveyhting else was negative. EMG negative for left side. All tests so far are negative. I have pain where I have vibrations. In leg calf muscle and behind neck. Am curious. Have thryoid but controlled with meds.

Hi.

Yours is NOT NORMAL LOW, Your's is TOO low. Much too low.

I take 3000 to 5000 of Methyl every morning. My last test had my B-12 level at 2000. I feel fine and have no symptoms of neuropathy (which is why I went on Methyl b-12).

Doctors DON'T KNOW ANYTHING ABOUT METHYL B-12.

They practice medicine, NOT NUTRITION.

Just wanted to add my two cents

mrsD 03-29-2010 01:25 PM

Please read the beginning of this thread. There is a link on the first post to American Family Physicians website that recommends anything below 400 should be treated.

206 is low enough to get permanent neurological damage with time.
Print out the article and take it to your doctor....definitely he is behind the times.

It is appalling how many people are tested by doctors and then told these antiquated readings are "normal" ...it is a waste of resources and sends the patient down a long painful path of degeneration!

Melody is right....start now to fix yourself. It is not expensive, it is safe, and effective. Take the oral at 5000mcg (5mg) daily on an empty stomach, for 3 months. Then get retested. You can decrease as you choose or stay at the 5mg level. Choose methylcobalamin for best results.

Please read the beginning of this thread carefully.

ouchmyfoot23 05-07-2010 01:07 PM

I just spent the last few hours reading about B12 from the first post. I'm amazed! I know my neurologist tested me for a vitamin deficiency, but didn't tell me the results.

I'm going to take the B Complex with my multivitamin for a while until I can get some higher quality brand. Thank you so very much!

My son and I are vegetarians, so I know he'll need something as well. I'm not sure if his Poly-Vi-Flor is enough. Kind of scared to mess with that, though.

mrsD 05-07-2010 01:44 PM

http://www.rxlist.com/poly-vi-flor-drug.htm

There doesn't appear to be any B12 in Poly Vi Flor.

Depending on the diet... eggs dairy, have some B12.

You should also check my Vit D thread... also being recommended for children as well (over certain ages either 1000IU or 2000IU now). Poly Vi Flor has the old amount.

http://neurotalk.psychcentral.com/sh...hlight=Vitamin

JoanB 05-08-2010 04:34 PM

Hey mrsD, you said this:

Quote:

And furthermore, what is very lame about the US, is that the LOWER end of the range is out of date, compared to other countries. Normal is considered 150-200 here and in Japan anything below 500 is abnormal.
And MelodyL (the overachiever :winky:) says that hers is 2000.

I'm not clear on exactly what number we're shooting for on the B12 level. When I first started my search for PN answers, I tested at +800 without supplementation. So is it correct to think that lack of B12 is not a contributing factor to my PN cause in my case? And if it's not, can getting my B12 higher still help?

Sorry if you've already gone over this...if I missed it, you can give me some study hall detentions if you want.:)

mrsD 05-08-2010 05:14 PM

Sometimes I wish Rose were here. She was our specialist on this subject from 1999 onward.

Her thought, which I read many times, was that people vary, and some need more than others. 800 may be enough for many people. But the logic of it all says, if you have symptoms, then maybe you need more than the average. So with time I've sort of come to the conclusion that perhaps the target should be 1000 or more. People with symptoms just are not "normal".

Because B12 is not really toxic, we can be liberal with it. Also it is not expensive either. So if you raise your levels to 2000, ( most tests don't go higher than that--because of the instrumentation limits), and you get BETTER...then that is your answer.
If you don't change at that level, then nothing is lost and you can discontinue. I'd stay high for some time, at least 6 mos to a year, and then you can decide to no longer do it, if there is no improvement.

There are not many supplements that you can do this with. B12 is rather easy to manage. This affords some leeway in making the decision.


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